Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

Hearing

Hurricane Season

· · 4 Comments

Harvey, Irma, José, Katia. It’s only September, and we’re already almost halfway through the alphabet, reeling from two of the most destructive Atlantic hurricanes on record. Recovery from Harvey in Texas and Irma in Florida and the Caribbean will take months, maybe years. We send thoughts and prayers, open our pocketbooks to support those in need, and worry. Where will the next killer storm make landfall? What’s next? Will we and our loved ones stay safe?

I once stood in the eye of a hurricane. It was a Monday, August 19, 1991. Al and I had taken Mindi, then almost 3, to Block Island for the very first time. We had heard wonderful things about this lovely place off the Rhode Island coast and were enjoying the little cottage we had rented and a great day at the beach the Sunday we arrived. This was, of course, before cell phones, wide access to Internet, and all the news-gathering outlets that we now take for granted.

We had decided to avoid TV for our time away from home. So we did not know anything about Hurricane Bob, a Category 3 storm that was heading our way. That is, not until our rental agent knocked on the door late Sunday and told us that Bob was expected to pass directly over the island the next day. We had a choice: to wait it out in the cottage or go to the local school that was serving as a shelter. We chose the latter.

Al entertained the children around us in the shelter by playing his recorder, and I have vague memories of making origami animals for Mindi and the others. It was crowded and humid in that gymnasium, but people remained good-humored, for the most part. Sometime in the early afternoon, the eye of the storm passed directly overhead, and we went outside to look. The sun was shining, the sky was blue, and it was quite peaceful and refreshing. As the sky darkened and the wind picked up, we retreated to the gymnasium to wait out the rest of the storm.

Later, we went down to the shore to check out the damage. Beached sailing yachts, broken tree limbs, and much fascinating detritus had washed up on the sand. Fortunately, our little cottage suffered very minor damage, just a few leaks. Most of the vacationers went home, and we had the island mostly to ourselves the rest of the week. Sometimes, ignorance is bliss.

A few days later, I realized that my period was late. After five months of infertility treatments that involved artificial insemination with Al’s sperm (the least romantic way to make a baby), we knew that I might actually be pregnant. Giddy with excitement, we brainstormed names beginning with the letter B. This was our first glimmer that Emily (we gave up on B names) was on her way.

I was remembering all this family history on Saturday afternoon, as Irma hurtled toward the Florida coast, and Al and I were taking a hike in the woods. He had convinced me to get out of the house and into the great outdoors. It had been an emotional week. My head was swirling. Last Tuesday, Dr. S informed me that he thought skin grafts could work on my fingers. This was completely contrary to initial assessments by him and the first hand surgeon I saw. Such good news. No guarantees that it will work, but he wanted to try before going to the extreme of amputation.

Then, on Thursday, we met with the vascular surgeon for an evaluation for hyperbaric oxygen therapy to accelerate healing. What I did not know was how intensive this treatment is: three hours a day in the chamber, five days a week, for six weeks. As the doctor explained, it’s like a part-time job. As of yet, we do not know if I will qualify for the insurance coverage, because the criteria are quite narrow and specific. But the Wound Center staff are doing their best to see if I can get approval. Then I have to figure out if I am really up to doing this. The prospect is scary, but if it could help save my fingers, then I need to give it serious consideration.

Like I said, my head was swirling. What if the grafts don’t work? That would mean a third surgery and amputation. What if I’m too claustrophobic for the hyperbaric oxygen therapy? How am I going to do that and keep up with my client work? Freelancers don’t get sick pay. How many more surgeries am I facing? How long am I going to feel incapacitated and so dependent upon others to do even the most basic things?

On Monday, my mental hurricane decreased in intensity. For the first time since early August, I was actually able to drive my car a short distance. First, I drove around the block while Al waited for me in the driveway. Then I took my maiden voyage to the hospital, a 15 minute drive, for an appointment with my infectious disease specialist. As we reviewed my antibiotics and discussed plans for the next operation, he looked a bit skeptical. He wondered aloud if I had contacted my rheumatologists to see what they thought about the potential success of skin grafts. I had not. But I will before proceeding. Had I not been able to drive myself to and from the appointment, his question would have set my head spinning again.

As it was, I drove home. I was able to use my key to lock and unlock our door. I was able to take the mail out of our narrow mailbox. I did not need a nap. I was able to get some client work done. I wrote this blog. And I did not hurt my fingers, even as my hands were tired and a bit achy from the excursion.

I do not know how much worse this is going to get. I do not look forward to more surgery or intensive treatment in a hyperbaric oxygen chamber, assuming that’s even possible. I do not look forward to months and months of healing. Perhaps I was just standing in the eye of the storm on Monday. But it felt really, really good.

Evelyn Herwitz blogs weekly about living fully with chronic disease, the inside of baseballs, turtles and frogs, J.S. Bach, the meaning of life and whatever else she happens to be thinking about at livingwithscleroderma.com.

Image Credit: NASA/NOAA/UWM-CIMSS, William Straka

Holy Grail

· · 5 Comments

For more than a year, I’ve been trying to figure out how to get a high-end wound dressing called Hyalomatrix Wound Device. Several years ago, my podiatrist gave me a sample while the product was still in development by researchers in Italy. This dressing contains hyaluronic acid, which occurs naturally in the body and aids in formation of new skin. I had tried using it very successfully on an ankle ulcer that had refused to heal. It was the only thing that worked.

I have only a tiny bit left of that sample, which I’ve been rationing on my six deep digital ulcers. Once again, it seems to be the one thing that is helping my skin to regenerate as the large scabs very slowly recede. So, I’m anxious to get my hands on some more (or rather, some more on my hands).

For reasons unknown — perhaps I wasn’t persistent enough, or perhaps Medline, the company that manufactures this product, updated their website only recently — I could not find a way to reach a human being at the company who could tell me how to order it. That is, until last week, when I finally figured out how to get through. I spoke both to catalog sales as well as their home care team.

When I say this product is high-end, I’m not kidding. Although they wouldn’t give me an exact price over the phone, they also would not sell it to me because it costs in the four figures, and that certainly exceeds my budget, as well as the company’s ceiling for direct sales to individuals. I need to get it via a prescription. This led me to call my insurance company to see if they would even cover it. To my surprise, the service rep thought it might be possible – but I would need prior authorization.

So this created the next challenge: which of my docs to ask? The most obvious starting place was the vascular surgeon at the Wound Care Center who has seen me twice since May. She is a great physician, very supportive and knowledgeable. However, despite my best efforts, which included sending her detailed information about the wound care product, research backing it up and a prior authorization form, for reasons that I still don’t understand, she handed me off to the Wound Care Center and would not submit the form on my behalf. Honestly, I think she was too busy to actually read what I asked her to do. The Wound Care Center staff looked into it and discovered that their supplier does not carry this particular product. Dead-end.

I was certainly not about to give up. So Monday afternoon, at a previously scheduled appointment with my Boston Medical Center rheumatologist, I shared my digital ulcer saga and all the information. He was glad to go ahead and submit the form and write me a prescription if I get approval. I also asked him to please ask for an expedited review, to avoid the average 15-day wait for a response from the insurance company.

We have known each other for several decades, now. So much of getting what you need depends on good, long-term relationships with your health care providers. Fingers crossed (at least, metaphorically) that I’ll get approval and be able to fill the prescription ASAP. To be continued . . .

Evelyn Herwitz blogs weekly about living fully with chronic disease, the inside of baseballs, turtles and frogs, J.S. Bach, the meaning of life and whatever else she happens to be thinking about at livingwithscleroderma.com.

Tick-tick-tick

· · 1 Comment

Friday afternoon, about 4:45. I was trying to wrap up a writing project when Al came home from work at the hospital (he’s a medical social worker). Usually he doesn’t get home on a Friday until 6:00, earliest. He said a brief hello, told me he was cold and needed to go to bed. This is not like him at all. He went upstairs and slept for an hour-and-a-half. When I checked on him, he was restless and very uncomfortable. I had to race out to buy a thermometer, because neither of us ever runs a fever when we get sick. His temp was 102.3°F. And he was starting to cough. Not good.

No way I was going to try to manage this by myself, especially with my hands in such bad shape. So I called our doctor and got the after-hours service. The nurse quickly assessed the situation and told us to come to Urgent Care. It’s been years, fortunately, since we’ve needed such a visit, and our medical group’s Urgent Care set-up has completely changed. We walked into a sleek new facility where you have to sign in on touchscreen computers, not unlike you find in a cell phone store. You plug in the last four digits of your phone, and that’s how you can see on the monitors where you are in the queue. We were number three.

Soon we were processed by the intake nurse, and then there was a short wait until we were shown into an exam room by a friendly male nurse and female medical assistant. Al’s vital signs taken (by this time his temp had dropped about a half degree, thanks to some ibuprofen), we waited maybe 10 minutes until the doctor came in. He was very thorough. The risk here was that Al does not have a spleen, which is part of the immune system. The first year we were married, he contracted mononucleosis and his spleen ruptured, requiring emergency surgery. He came home from the hospital the day before our anniversary—an auspicious conclusion to our first year.

After a slew of blood tests, a chest X-ray and urine sample, we waited around for early results—all negative. So the doctor sent us home with a prescription for an antibiotic as a precaution against any lung complications until all the tests were in.  Al was feeling better and his cough had subsided, so we hoped he just needed rest and time to recuperate.

We both settled in for the evening. Around 10 o’clock, the phone rang, but the caller ID said “United Bank,” so I ignored it. Why would a bank be calling on a Friday night?  I went about my business, did my hour-long routine with my hand care for all my ulcers, and took 200 mg of gabapentin for nerve pain. Then I took a look at the phone. There was a voicemail. By this time, it was about 11:30. The message was from Urgent Care, asking us to call the overnight service. It took me 45 minutes to get through to the clinician on call—Al’s white blood count had come back elevated, sign of a more serious infection, and they wanted us to go to the ER to have him checked out.

So, I woke him up, we both got dressed, and I drove him to his hospital. We arrived close to 1 AM. Now, the ER at Al’s hospital is neither new nor sleek. On a Friday night in July, about 20 other ambulatory patients were sitting around the waiting room in various stages of alertness, diddling with their cell phones. The intake nurse was stressed and busy with a young man on a stretcher who was apparently in and out of consciousness. An old episode of Law & Order (as in Sam Sheppard was the DA) was playing on the TV monitor. We settled in for a long wait.

I was tired, draggy from my meds, and scared. I did a little research on my phone to figure out what Al’s white blood count meant. I tried to find a comfortable position in an uncomfortable seat.  I covered my fingers with my hand warmers, because I was nervous about picking up some kind of infection from the hospital. Al kept himself busy reading a magazine that he’d had the presence of mind to bring along. He wasn’t feverish anymore, thanks to a dose of acetaminophen and one of his new antibiotics. I tried to doze, and I tried to watch a little TV, but the next program was even worse—some ridiculous show about vampire hunters. Really? In an ER? A show about vampires invading a blood bank?

Finally, around 2:40 AM, it was our turn to be seen. Al got to lie down on a gurney, and I scrunched into a chair. At least we had a semblance of a room where they kept the supplies, instead of getting stuck in the hallway. Then came the procession of nurses, physicians assistants, and eventually a doctor to check him out, all requiring repetition of his medical history. I was adamant that they get the test results from Urgent Care, rather than stick him again for the same blood work or do yet another chest X-ray.

This proved a bit more complicated than it should have, because the Urgent Care service is on a different electronic medical record system than the hospital. So we had to wait for a doctor who is affiliated with our medical group to be able to access the results. By the time all of this was accomplished, around 4 AM, Al had been able to get some more sleep, his temperature had come down, and the doctor who saw him thought there was no point in admitting him. He advised that Al stay on the antibiotic for 10 days to account for the infection, though its source was still unclear. We were to follow-up with Urgent Care to get more test results as they became available.

Back home we went, and straight to bed. I finally got a few hours sleep before my hands woke me up around 8:30. I was getting some breakfast when the phone rang. Caller ID: United Bank. This time, I knew enough to pick up (and tell them, later, about that strange misnomer). It was Urgent Care with another test result: Al’s Lyme Disease titre had come back positive. Fortunately, the antibiotic that the doctor had prescribed happens to cover this pernicious bacterial infection. Also fortunately, we caught the disease early. From what we were told, he has every good chance of a full recovery after a 14-day course of the antibiotic. And he’s learned a very important lesson about checking for ticks when he takes a hike in the woods.

Needless to say, it was a real relief to have a definitive answer for his sudden illness, as well as a straightforward cure. He continued to improve through the weekend, saw our internist for follow-up on Monday, and is back to work today.

Here’s hoping we have no more medical surprises anytime soon. And no more close encounters with blood-suckers, be they ticks or ridiculous TV vampires in the middle of the night.

Evelyn Herwitz blogs weekly about living fully with chronic disease, the inside of baseballs, turtles and frogs, J.S. Bach, the meaning of life and whatever else she happens to be thinking about at livingwithscleroderma.com.

Image Credit: Brandon Morgan

Fault Lines

· · Leave a Comment

This past week brought more doctor’s appointments. The culture on my ankle ulcer came back positive for a rare gamma-negative bacteria. And, of course, I’m allergic to the sulfa antibiotic that is the treatment of choice.

So it was time to see my infectious disease specialist. And, of course, he was not available. Another very experienced specialist was covering for him, but when I asked for an appointment, I was told that his next available was in three weeks.

Now, I don’t know if the receptionist really understood what the doctor’s specialty is all about. But I wasn’t about to take no for an answer.

“This is an active infection,” I said. “I have to see him this week.”

She took my phone number and told me someone would get back to me. Soon after, I got a call from one of the nurses, who said the doctor had reviewed my test results and wanted to see me that day. Which I did. He gave me a prescription for a different class of antibiotics, and so far, it seems to be working.

It pays to be assertive, especially when dealing with the medical profession. Over the past three-plus decades, I’ve learned that you have to advocate for yourself. I don’t mean being obnoxious or yelling at hapless appointment secretaries. But medicine involves a lot of gatekeepers, some of whom insist on sticking to rigid rules of access. I do my best to be firm, polite, yet clear about what I need. That requires a willingness to push the envelope.

It also requires creative problem-solving. The other appointment that I needed was to see a wound care specialist. Several of my digital ulcers are somewhere on the skin damage continuum between second and third degree burns. I know they are going to take months more to heal. This is the worst they’ve ever been, and I need some serious advice.

When I saw my podiatrist about my ankle ulcer, he had referred me to the wound care specialist at his hospital, an hour-and-a-half from home. This physician is very good. But when I called for an appointment, I was informed that one of my other doctors, who is familiar with my digital ulcers, would have to send some medical notes.

Enter the world of HIPAA releases. I had two choices: to send records from my Boston Medical Center rheumatologist or from my rheumatologist at home. BMC, I soon discovered, would take 7 to 10 business days to process the written and faxed request. If I went through my local medical center, the request would only take a few days. But there was still the matter of then getting an appointment. All told, I estimated it would be a good month before I could actually be seen. Too long.

So, when I saw the infectious disease specialist last Wednesday, I asked his advice for a wound care specialist at my local hospital. He gave me the name of a vascular surgeon, and I then asked Al, who works at the hospital, to find out what he could. One of his colleagues, another social worker who knows this doctor’s work with patients, gave a sterling recommendation. I called the wound clinic and immediately got an appointment for this coming Thursday.

I’ve learned a great deal from living with scleroderma for three-plus decades about how to get the right care. You have to be tenacious, no matter how lousy you may be feeling that day. You have to understand the complexity of your disease, research about treatments, what’s covered under your insurance, what isn’t, how to find the right physicians, and how to get the answers that will really help you to heal.

And that’s just for starters. At the granular level, managing a chronic “pre-existing condition” is a whole lot more complicated—and stressful, and exhausting (not to mention expensive and time-consuming)—than soundbites or political slogans can ever convey.

Evelyn Herwitz blogs weekly about living fully with chronic disease, the inside of baseballs, turtles and frogs, J.S. Bach, the meaning of life and whatever else she happens to be thinking about at livingwithscleroderma.com.

Image Credit: Zoshua Colah

A Little Progress

· · Leave a Comment

I took a walk around the block Monday afternoon, my first such excursion in three weeks. The weather is starting to clear, and so are my back pain and the sore ulcer on my left ankle. All the leaves have unfurled, and the streets are cloaked in green. Crabapple petals scatter like pink snow on neatly trimmed lawns. The red tulips in our rock garden have bloomed, and the blue hydrangea that Al gave me for my birthday is taking root.

It’s a relief to begin to feel like myself again. Over the past couple of weeks, I was able to rule out a compression fracture in my spine and see a physical therapist who did a thorough evaluation. She confirmed my sense that I had sprained my back. No nerve damage, thank goodness. Heat treatment, the right set of stretching exercises, and a better mix of acetaminophen and ibuprofen are helping me to heal.

As for the ulcers on my ankle and fingers, I received some very good advice from my excellent podiatrist, who also knows a great deal about wound care. Among other things, he gave me some Lidocaine gel that has made a huge difference in my ability to tolerate my ulcer dressings while I wait out the healing process. He also gave me a special mesh infused with silver that is helping my ankle. Silver has natural antibiotic properties, and the results so far are promising. I’m awaiting the outcome of a culture to see if I need additional oral antibiotics.

I plan to get a consult with a wound care specialist sometime in the not-too-distant future for advice about better ways to manage my ulcers. I’ve been using the same approach for decades, and there are new techniques and treatment options that I hope to discover so that my skin doesn’t break down as badly again. No guarantees, of course, but this has really been a siege that I don’t want to repeat, if at all possible.

Meanwhile, the gloomy rain and chilly weather that have encased New England for the past few weeks are about to end. We’re expecting temperatures in the 80s by midweek. It can’t come too soon!

So, here’s to the end of a downright nasty spring. Summer doesn’t officially start for another month or so, but I’m looking forward to Memorial Day. If you’re going through a rough patch yourself, I hope you find the good medical care and healing that you need, too.

Evelyn Herwitz blogs weekly about living fully with chronic disease, the inside of baseballs, turtles and frogs, J.S. Bach, the meaning of life and whatever else she happens to be thinking about at livingwithscleroderma.com.